Ditto the newbie the status

[elaphe56]

Hi guys, my name is Kathy and I'm from South Carolina, USA. I'm 57, widowed, currently unemployed- broke busted and disgusted, lol, sorry, normally a very positive person I've become unbearably cynical lately, I'm workin' on it. Anyhow, I was diagnosed the end of Sept., 2011 after having four flares between June and then. My primary interests are in animals and art. I worked for many years (18) in animal research and then another10 years or so as a farm manager, (llamas), and as a vet tech. I also have Hep C so the plan for my treatment is that I'm on 60 mg prednisone now and awaiting (hopefully) a freebie on the Rituximab. If I had one concern to ask others it is how the news of this disease was received by family members. Mine are completely ignoring it, and it really hurts, I feel so alone, at this point I don't know if I'm taking it too seriously or they are just not. I've come to think that the best thing for me is to just to let it go due to the stress it's causing me, I hate asking for any kind of help and definitly never expect anything from anyone.

[NicShaf]

Hi Kathy,
Welcome. Sorry to hear you've been diagnosed with this, but you've found a great site for support and information. I was diagnosed almost a year ago, and these wonderful people have helped me tremendously...I hope we can all do the same for you.
I'm with you, I'm usually very upbeat and positive, but since diagnosis, I've been much more cynical. Partially adjusting to my new life...and mostly because of Prednisone!
I'm sorry to hear that your family is not being supportive. You are not taking this too seriously. Wegener's is a serious condition and shouldn't be taken lightly.
my fingers are crossed that you can get RTX, and be on the road to recovery!

[Dryhill]

Hi Kathy,
I am very sorry to hear about the lack of support from your family. One way of getting themtaking notice is to let them know that you have a very good life assurance policy that will pay out, say $2m and that you have still got to make out your will. Now that should get them all round to see how you are and if there is anything they can do for you.

Your story makes me realise how lucky I have been with support from family, friends and neighbours. Recently I came home from having chemo to find my neighbour (who has keys to my house) had found the key to my garden shed, filled the mower with petrol and cut my grass for me!

[norcalian]

Hello and welcome to the forum!

The thing about us Weggies is that we don't really look that sick. not unless we're hospitalized for kidney failure or something of the like. I guess I was fortunate in the sense that my family and friends are of the Google generation...when i was first diagnosed instead of asking me what Wegeners' was (which is a good thing because I really didn't know at the time) they went straight to Google. The first few sites had really old information about 5 year mortality rates, etc. Anyway...everyone took it very seriously and thought I only had a few years to live. Of course that isn't the case...and had to give new updated information to people...but the impression about the disease was made and no one questions the severity of it.

So perhaps the next time anyone asks you anything about WG...just tell them to Google it . For whatever reason, the sites with the dated information are the ones at the top .

[Sangye]

Hi elaphe, welcome to the group! Like you, I have also struggled to remain positive at times. I've had a rough go with Wegs since I was dx'ed in 2006. I'm sorry your family doesn't understand. My own family left me 3 months after dx, so I have great sympathy for anyone who doesn't have good family support. On the other hand, the support I've received from friends has been incredible. I couldn't ask for more.

It's important for you to find a doctor who specializes in Wegs (as opposed to a regular rheumy). True for any of us, but particularly since you have the complication of Hep C. Let us know if you need help doing that. This is a wonderful group, with tons of support.

[elaphe56]

Thanks so much for the words of encouragement, it is truly appreciated! btw, I am really digging this site!

[drz]

I also have Hep C so the plan for my treatment is that I'm on 60 mg prednisone now and awaiting (hopefully) a freebie on the Rituximab. If I had one concern to ask others it is how the news of this disease was received by family members. Mine are completely ignoring it, and it really hurts, I feel so alone, at this point I don't know if I'm taking it too seriously or they are just not. I've come to think that the best thing for me is to just to let it go due to the stress it's causing me, I hate asking for any kind of help and definitly never expect anything from anyone.

I often felt pretty giddy and euphoric when on higher dosage of prednisone. If you are on 60 mg and still feel down much of the time, remember that a clinical depression is often a natural response when you have a serious or chronic health condition and you might wish to pursue an evaluation for this, especially you also cite some other major stressors in your life right now. I also found mental health counseling helpful in try to come to terms with with this lovely disease, and my second chance at life, even though it is a somewhat more limited style.

The most natural response for people when you tell them about your disease is a puzzled look on their face. But then I doubt few of us ever heard of it either until we were diagnosed. I found it hard to predict how people would handle the news about my illness. Some people I hadn't seen for years suddenly became very supportive, (some came to see me before I died) others who I thought might be helpful or supportive seemed scared off by my illness, probably because of their own issues and fears of their own mortality. The good news is that it will help you sort out who are really your friends, unless of course they are currently over whelmed with their own issues.

Welcome to the forum and best wishes for smoother roads ahead.

[elaphe56]

Thanks, you are so right about never hearing of this disease before, I guess I too need to be more understanding of them. I have dealt with depression for over 20 years so thankgoodness I do have a therapist and psych that I trust and see regularly.

[Al]

Kathy--Your plight, sadly, is not so uncommon. I mean, the “broke busted and disgusted” part. In many cases the “unemployed” bit as well. (I have my own partial workaround, so to speak, for that: I am a freelancer, so I can’t be fired, though I can lose a few clients of they decide I am too sick to service them properly.)

Your family situation touches a nerve with me. I hasten to point out that I have the most supportive family in the world, though it is fair to point out that “supportive” is not the same thing as “understanding”. That is a trickier issue. I think that one can be supportive without really understanding, but the lack of empathy almost always translates into some form of denial. So, in some cases, does too much empathy. A disease like Wegener’s imparts a very heavy load on it’s sufferers. For family and friends, this “load” is too easy to interpret pejoratively as “baggage”. In any case, not everyone is interested in, or capable, of sharing the burden. How this plays out varies a lot. Sometimes, it in is active denial: “You can’t possibly be sick.” Other times there is a kind of desperate Pollyanna-like enthusiasm: “You might be sick, but you’ve got to act as though you aren’t!” (This more or less describes my wife’s MO). In the worst cases, the sufferer is marginalized. This is bad whether the marginalizers are family, friends, or professional associates and customers. I have a client who had heard that I was “seriously ill”, and assumed, without calling me, that I would be out of commission. So when I showed up for the gig--for me a booking is a booking until officially cancelled--I found my replacement already moving in....

Still, in a way, I understand the problems from the families’ points of view. Samuel Johnson, reputedly, noted that “nothing focuses the mind like a hanging.” Well, we here have all felt the noose around our our necks, and are very focused on our situation. Internalizing this ever-present sense is very difficult for those whose necks have not been reddened by the rope. So, Kathy, I would say that those who have not faced the gallows are unqualified to determine how serious your situation is. But it is understandable that they can’t understand!

As far as stress is concerned, I understand your point. But you are not alone in an unfeeling universe--not when you have use to vent to! Rage is good, when directed. Thanks for sharing!

Al